Basis of inquiry: During informed consent, providers often present information in a complicated manner and may not differentiate between standard cancer treatment and the research objectives of a clinical trial. While clinical genomic sequencing is complex, it is important to understand how parental genetic knowledge may influence future decisions, including study participation and comprehension of test results. To increase parental understanding, this study utilized a two-phase consent process.
Purpose/Objectives: Evaluate change in parental genetic knowledge at the completion of a two-phase consent process.
Methods: Parents interested in clinical genomic sequencing for their child with cancer participated in a two-phase consent process. Prior to a study introductory visit, parents completed a 12-item genetic knowledge test. The visit was conducted by a trained study nurse, providing genetic education and study summary. Approximately 1–3 weeks later parents returned for an informed consent conversation conducted by the same trained study nurse. At the completion of the informed consent, parents again completed the 12-item genetic knowledge test.
Findings or Outcomes: 120 parents participated in both the study introductory visit and informed consent conference. Comparison between the two knowledge questionnaires found parental genetic knowledge to significantly improve on 10 of the 12 items, after the informed consent conference.
Disclaimer: [1 CH] will be awarded for attending all three paper presentations presented during this timeslot. Partial credit is not available.
- Opening Keynote: Never Ever Give Up! (101)
- General Session: Oral Medicine for Pediatric Hematology/Oncology Nursing (102)
- Going Viral: Review of Viral Illness and Antiviral Therapy in Hematopoietic Stem Cell Transplant Pediatric Patients (200)
- Management of Retinoblastoma in 2018: A Nursing Perspective (201)
- Managing Depression and Anxiety in Childhood Cancer (212)
- Belinda Mandrell, PhD RN CPNP